2008 - Grade 7

I started seeing a gastroenterologist, who then diagnosed me with ulcerative colitis and I was put on a heavy dose of steroids, (prednisolone). This started to reduce the inflammation, but my doctor wanted to get me on a better treatment for the long term. I was given a prescription of sulfasalazine, one of the more common 5ASA class drugs. A few days in and I started feeling weird. It started with a head ache, nothing unusual as I was often dehydrated. But the headache increased, and nausea set in. I started vomiting, shaking and sweating. I was freezing cold but hot at the same time and I had a stabbing pain in my calves. This went on for the whole night. I tried about 6 other forms of the drug, but all produced the same side-effects. Eventually I got to mercaptopurine, which didn’t give me vomiting and the shakes, but it took a while to get the dosage right as the blood tests showed that it was either sub-therapeutic or that my readings were off the scale… no in between. But we persisted and managed to get some sort of normality with the help of loperamide daily. Normal now for me was; waking up early in the morning, going to the toilet 4 – 5 times in the space of an hour, eating breakfast and then vomiting it up, going to the toilet several more times throughout the day, often having accidents.

I remember my first week of high school, I was walking home and had an accident about half way there. There was no where to stop and clean myself up so I just kept walking, crying the whole way home, my dress stained brown. Some teenage boys walked past me and shouted ‘retard’ as I walked as fast as I could home. By the time I got into the shower, the fecal matter had spread all the way down my legs. Once it was all washed off, it was evident that the acidic bowel movement had burned my legs and but cheeks. I started packing spare knickers with me everywhere I went. I had a spare dress in my locker at school and always knew where the closest public toilets were when I went out. My friends all knew that I couldn’t eat gluten and were fairly accommodating when it came to birthday parties and other outings, but I wasn’t very open about much else... I hid the truth from my friends because I was ashamed that I regularly made a mess of myself. I didn’t want them to know and I didn’t want them to think lower of me because of it. So, I never told them.

One of the most awful experiences was my Year 7 camp. We were in tents in the middle of a valley and the camp organizers hadn't taken into account my gluten free diet, so for breakfast, all I could eat was: tinned fruit and milk. This led to me soiling every pair of pants that I had brought with me. Thankfully I had a lovely, understanding teacher who helped me clean myself up in the nearby river and took my dirty clothes to the school's campus nearby to clean them in a washing machine. this was still humiliating to say the least. I didn't want to be known as the kid with the bowel problem, who made a mess of themselves on a regular basis. Luckily for me, when I returned to school, the grade co-ordinator showed me where a shower was in the office space and gave me full permission to use it if I ever needed to.